Hi all
Lorna if the gcsf injection is the same as neulasta then I have been fine with them . I dont find the injection too pleasant but in the grand scheme of things its fine … some people complain of bone pain but have to say I havent had any problems.
The cant be bothered mood you are feeling , I get that too and wonder if I will ever have the effort to do anything ever again but it soon goes . i think the cant be bothered feeling is rubbing off on my husband , better put a stop to that !
Louisa , have seen the label . If you are in the mood for frivolous spending then better tell you the chipmunks are in fact squirrels ! dont know how I missed the tails which are so obvious to me now.
Caroline looks like you are our tax pioneer. I think we are all a bit behind you by a couple of weeks .
Well still felt sick today - not too dreadful just like car sickness - have been taking all the anti-sickness stuff, and eating normally (ish). Still so tired though - I’ve never slept so much!
I also have the can’t be bothered feeling (when I’m not asleep lol) - I had originally been planning to go back to work once I saw how chemo affected me. I work for the NHS board that are treating me, in a desk job, on a part time basis. They are being really good and saying I can work how and when I like ie from home, do all my hours together rather than a set number each week etc etc. I thought this was a good idea to start with - now I’m just wondering if it’s worth it (which isn’t like me - I have worked all my life - I have two kids and between them only took 2 weeks maternity leave). My job is only a 1 year contract - whcih finishes next august, just as I will be finishing my treatment. I can’t help thinking if the chemo is going to mess me up for a week or so - when I feel better do I really want to go to work? or do I want to spend the good time with my daughter? I’m also renovatring my house at the moment - and could do with finishing it lol - I can’t help thinking that for the first time in my life I should put myself first for the next year and sod everything else - any advice would be appreciated
Glad everyone else is doing okay - I think I’m going to be slightly behind everyone else with the Tax - my rads are in the middle so wont start tax till next April - I’ll be looking out for pointers though!
Went for my 3rd FEC today and have had it delayed due to having a cough/cold ( i blame the grandkids but how can you keep away from them ) + liver function slightly low, my onc said best to be on the safe side and leave it for a week, im sad because i want to get it over with and pass the halfway mark ( not because i like having chemo) but also glad as i wouldnt want to get ill ( OR MORE ILL THAN I ALREADY AM!! ) Margaret i agree with you put yourself and your family first you deserve it although it sounds as if you have good employers who actually give a dam unlike me who works for a supermarket chain i won’t mention their name but they are ““GOOD WITH FOOD”” ive been off sick since august and the only contact ive had with the store is when i have rang up 3 times for my monthly wage slips so i have decided to treat them as they treat me and keep taking my sick money ( which i think i fully deserve for 17yrs service ) anyway i hope everyone is doing ok we keep plodding on don’t we, oh i had some good news today though my muga scan was fine so im ok for herceptin which will start with my Tax " they think"
Love to All MIZZY*** ““Sorry about the rant about work my partner has banned me from stressing about them to him he says they are a bunch of *******””
Thanks for that Mizzy - I think I have decided that I am going to keep in touch with work but not actually do any ! Unfortunately i haven’t been with them long enough to qualify for contractual sick pay so will have to survive on ssp, which will be a significant drop from my salary - but having weighed up the savings on travelling/lunches/works do etc - and insurances on my mortgag + bills which will reduce the load a bit - I don’t think i will be that much worse off. Funny how all this crap completely changes your priorities isn’t it?
and don’t you apologise for ranting - it does you good somtimes!
Just reading through the threads trying to eek something useful out of them ready for my second FEC this afternoon…there is such a lot of kindness there, so thank you for that because I feel scared and quite upset this morning, and it has helped to pep me up a little.
My son is being picked up by a friend who, although has been very kind herself with me; allows her daughter to say and do mean or unkind things, which if he is not quite upset by, he trys to repeat them at home. We tell him, “in this house we don’t say that”, or just “speak kindly please…” I want this to be the last time he goes there but don’t know how to go about that. I tried telling her mum when she was first horrid with him at school and she told me it caused a lot of friction in the house as the dad “over-reacted”…It’s on my mind…There is another friend he could go with next time- how do I manage the “transition”? I just want my little boy to have an easy time as possible at the moment…I saw the little girl at school this morning and she said “he is coming to my house but he is not allowed to play with me” Oooh the little…
Also really worried about being bad for the next… however many days. I too am having an injection on sunday by a district nurse, presume its neulasta, as I haven’t been great re infections. My first FEC was awful and last week my whites were too low to do it, but I was glad as I was not ready…I also had a 6 hour wait for my treatment last time! .Are all FEC’s the same outcome each time or do some of you have diferent results re sickness etc?
Work have been cool; get sickpay and no pressure there but recently taken on a big mortgage, no family here and hubbie works for himself so need to keep money coming in. The pressure is in the walls here I suppose! Said I would go back in between Fec’s but don’t think I will now. Too many issues at work and quite charged environment. At -risk teens.
Hair loss: most positive thing really. Have been on radio as they came with me for wig fitting (friend works there) and it made it so much easier. It was what I was most scared of so decided to bite the bullet. There are pictures of me in varous ones on the bbc/leicester website: have a look if you like they are funny if nothing else! (www.bbc.co.uk/leicester/in pictures) Got one long (to get me in glamourous mood!) and short sandy bob. Went to school in it yesterday; which was sooooo hard but did it with a big smile (grimace)! do wear scarves in day though. Wig so hot! I look like a baby eagle without though!
So, whatever advice you might have, please give it too me…I really need some positive vibes today!
Hi Nina,
I haven’t been too bad sickness wise with the first FEC I had on Wednesday. I have been drinking loads of liquids so maybe that helped. It is so difficult to get the right amount down. You have to literally walk about with a cup or glass and just keep topping it up with water, tea or whatever!
Also I read on here that eating small meals and often was a good idea. It is so strange but one minute I feel quite sick and tired with no energy. The last thing I really feel like doing is eating and then I eat something small like soup or ricecake and I feel much better. You think that eating might make you actually be sick - but it doesn’t with me anyway.
Were you sick with your last FEC? It is terrible that you have to wait so long. that can’t help at all. Where do you live. Fizzy water is good as well. Oh and lots of fresh air. Even if you don’t feel like moving from the sofa a little walk seems to be very uplifting.
Can’t think of any more advice as just a beginner myself.
Good luck this time. Sending lots of positive vibes.
Lorna X
Margaret - hang on in there. Sounds like you are doing OK. X
Cally - Seasonal Squirells! of course!! have made it my mission to find some on Wednesday in town!
Margaret, completely with you on the changing priorities thing. I had taken a break from work in Jan this year, prior to my dx, in order to finish renovating our house, sell it and move which we did in June. Was originally intending to go back to work later this year, but obviously that’s not going to happen for some time now and even tho I miss going out to work am enjoying spending more time with the family, just not having to juggle things the whole time and play catch-up every weekend. Taking things at a slower pace and appreciating ordinary things a lot more, especially time with my kids. Go for it, we can go back to work anytime!
Hi Nina, sorry to hear you had rough time after 1st FEC, agree about the eating snacks. I found cereal bars really good or digestive or ginger biscuits. Even if I didn’t feel like eating, just a little biscuit seemed to settle my stomach. Also found lemon and ginger tea was good, and cranberry juice. Also, after my 1st FEC i did feel quite sick so asked if they could try different anti-sickness tablets which they did and that made a world of difference. I would say to mention everything you’re suffering with (call the hospital if you’re not due in for another three weeks) and ask for help, it’s not making a fuss and you might be suffering with something they can easily help with. It’s hard trying to make sure the kids are okay when you’re at hospital or feeling low, but it sounds like it might be a good idea to try your other friend next time you need help. Maybe you could say to the little girls mum that she’s already been so kind you don’t want to take advantage and are ‘spreading the load for favours’ kind of thing? At the end of the day you want your son to be happy and don’t need to worry about other people - so do what’s right for you.
Thanks everso much Louisa and Lorna,
Hanging on in there…, as we all are!
louisa; yes, I think I will say that thankyou. Very discreet! My little boy came home from school yesterday with a card saying “I love you mummy whatever you look like!” I cried straight away…The lillte sweetie said that he had been upset with his teacher about mummy losing her hair and so she helped him to make a card, which he said made him feel better. That’s lovely isn’t it.
lorna, I live in Leicestershire…have been drinking a lot and blackcurrant tea seems to be cutting thorugh the ickyness…bought myself a juicer to try and get some vitamins back in me and sent hubby out just now to get a steamer!
He seems constantly anxious…it must be so very hard. Wondering how I can best support him? Just felt like I had been hit by a car last time but aches and pains don’t seem to be here this time. Steriods making me hungry but aware I haven’t been to loo yet! Lost a kilo or so last time but maybe that was just my hair!
Anyone got any good perking up partner advice not involving sex!?
Hi there
maybe this is obvious but for those of us who felt low after second fec (not sick more cant be bothered , lethargic)
do you think its when we come off the steroids after day 3 . Someone mentioned it to me yesterday and wondered why i hadn’t made the connection before .
Also had my first curry in months last night , boy do I regret that . I had 4 tongue ulcers within a couple of hours. Has anyone else had an adverse reaction .
?
The only other things I had last night were a glass of champagne and a nettle tea and milk thistle tea. The water was quite hot but reckon its the curry (I know you are all thinking what a bizarre mix ! )
Haven’t had a problem with curries myself, in fact this time round haven’t suffered too badly with sore mouth, but have been using Corsodyl(?) mouthwash everyday which may have helped. I sometimes feel like a walking biology experiment - do you? Think you’re probably right about the steroids, am feeling much better this week.
Your little boy sounds lovely Nina, I’m very close to my son who’s nine and is finding things more difficult to deal with than either of my daughters. Find it hard not to get very emotional in front of him sometimes, especially when he insists on carrying heavy shopping bag or offers to wash up (not something that often happens in our house!).
Am off out tonight for birthday meal celebration for husband and son who both had birthdays last week - glass of champagne sounds good Cally, think I’ll be heading down that route myself!
Hi Cally - thanks for the GCSF response and all the other advice. I had second injection today (day 4) and that is it now. Dont’ know if I might get some side effects in few days but so far has been OK. Not sure what is the chemo and what is the injection.
God I hope I don’t go down hill when the steroids stop. Took my last ones at lunchtime.
So sorry about he curry episode. It’s such a shame because you obviously just tried to have a nice normal evening with curry and champagne and it backfired. Have a good gargle and drink lots of water and DON’T LET IT GET YOU DOWN!
Nina - your little boy does sound lovely. I haven’t got any children (unfortunately) but they can do and say the most amazing things sometimes.
Since my first FEC on Wed I seem to worry more about everything. It is probably the same with everyone. You seem to be very worried about your husband. I feel really guilty when my husband has to do so much more than usual. I know we shouldn’t but it just seems to happen like that. I am worried that he’s going to get depressed and down.
It is difficult to think of things to perk them up. I suppose we are allowed to have sex on FEC but does anybody actually do it? I’m sure best thing you an do to cheer him up is to be good to yourself. And when he see’s you looking brighter it will give him a lift as well. Or perhaps encourage him to do something nice on his own for a few hours. A hobby or going for a (quick) drink with a mate. Sorry my advice is crap. You’ll just have to go through with the sex (LOL).
I am on day four of FEC now. What happends next. Do you lose energy as the time goes on? When can I have a curry and a glass of wine?
Please can I join the gang? I’ve spent the last half hour reading your posts and they’re so helpful and inspiring.
I’m having my second FEC next Thursday (6th Dec) as long as blood tests are o.k. My regime is 6 x FEC followed by rads and Tamoxifen for at least 5 years, so I don’t have to face the dreaded Tax and I want to send hugs to all of you who do.
Cally - I think you’re absolutely right about what happens when we come off the steroids. After my first FEC I’d started to feel quite good by Day 4 (even though my sleep had been disrupted for 4 nights) then on Days 5 and 6 I just nose-dived, physically and emotionally. Kept bursting into tears and started to get really despondent and scared about going through it again - and again and again…! At the time I didn’t make the connection (you don’t think straight when you’re wallowing in the depths of despair!) but I’m sure it was a reaction to coming off steroids and to the lack of sleep. I’m pleased to say that I felt like ‘me’ again by Day 7 and weeks 2 and 3 have been fairly normal.
Shivers and sweats - I had shivers in the first few days and found it helped to eat something. Now I’m having night sweats but I was occasionally getting them before chemo so I don’t know if they’re connected.
Hair loss - It’s so inspiring and also humbling to read about how lots of you are coping with this. I’ve been really anxious about it. I used the cold cap during my first FEC and hope to continue with it. No hair loss from head yet, eyebrows and eyelashes still intact, but I think my pubic hair is starting to go!! Just noticed it today. I’m still expecting my head hair to fall out, just wondering when it’s going to start. Did anyone else keep theirs after FEC 1 and lose it later on in the treatment?
Nina - you asked for advice on perking up your partner not involving sex. My partner is getting back rubs and head massages whenever I have the energy. I know it’s no substitute but he loves the care and attention.
Take care everyone,
Caroline xx (There’s another Caroline already on here so maybe I should be Caroline 2)
Lorna - I read your post just after posting mine - and aying how awful things were after Day 4. I’ve realised you’re on Day 4 today so I really hope you don’t get the big reaction I had. If you do, the only consolation is that it will definitely pass!
As for sex, we’re definitely allowed it on FEC - I just haven’t felt like it!
Those steriods have a lot to answer for, I am on my 3rd FEC and for about 4 days I am lethargic and can’t sleep and very hungry. Day 5 onwards and I end up ringing friends and the breast cancer nurses because I am so fed up and low. Exactly one week later and I am bouncing around again having a great 2 weeks before the next chemo. Hence writing this at 3 o’clock in the morning.
I am dreadful at remembering everyone’s details but I am glad to be able to share with people at a similar stage as me. My next chemo will be TAX and Herceptin on 20th Dec…hope it doesn’t clash with Xmas too much!
It has injected me with a bit of Dunkirk spirit! Thanks. I was going to have a bath and retreat into myself but I think I will think about more positive lighter things now as I soak.
Cally: I’m off alcohol totally. Virtually scratching a five bar gate on my bedroom wall so good on you. No mouth ulcers for me - yet- but I have been massaging my gums and avoiding all sugar. Maybe a curry and glass of wine was worth it; makes me drool! Perhaps you could rinse out with hot salty water after you have finished eating/ drinking?
Louisa: hope you had a great night out!
Caroline(2): hi; I’m a newbie too and am on the same regime as you, just two weeks in front.Let me know how you are getting on… And pubic hair…yes, head too but not legs eyebrow or lash. Yet. I like to say that after everything!
Lorna: I had my first GCSF today and now feel sick. It’s done 24-48 hours after chemo. I’ll be getting it each time now.
Caroline: I hated the steriods and still do. They make me feel wired and not myself. when i came off them last time it was just like PMT and I’m used to that. We all are here i’m sorry to say! Felt myself by day 6.
I’m now on day 5 following first FEC - and I think it’s getting better! Having felt lousy for the first 3 days it does seem to be gradually getting easier. Worst thing now is heartburn and constipation (I’m sure you needed me to share that!). Mouth tingling a bit so I’m hoping the ulcers aren’t about to kick in but I’m using the mouthwash regularly so I hope not.
Still feel a bit lethargic - it seems to be coming spurts - one minute I think I’m fine and decide to hoover or iron (not tooo much though) and the next I’m back on the sofa feeling like I’ve climbed everest!
Obviously it is too early (I think) to be losing my hair yet - but I have to say that my head does hurt. I’ve noticed when I towel my hair dry this last couple of days that there are ‘sore’ patches that just feel like their bruised? Anyone had this so early on?
Going to ring my boss tomorrow and tell her that I’m not going back to work - not looking forward to that conversation cos she has been so good - but I’m just going to take a bit of ‘me’ time now, I’ve decided.
Lorna- Glad 1st fec went ok - hope you are still well
Caroline- Looks like you are a day ahead of me - have tax 21st dec - no herceptin for me though. Have you been giving your drug regime for tax-I am having dec the day before twice and day - 4 times the does than now - so will be bouncing off the ceiling by then. ALso have to have antibiotics day 7-10. Something to look forward to. Spend many nights watcvhing dvds on the sofa at 0300 thinking I will fall asleep - no such luck…
Cally - you do make me laugh - how did you mistake squirrels for chipmunks!!!
Maragaret - glad you are starting to feel bettr after 1sr fec.
Mizzy - sorry your 3rd fec was delayed - it is amazing what we now wish for.
Nina - hope you 2nd fec was ok
Caroline (2) - welcome - this board is just amazing - so much support, encouragement and advice - not sure where I would be without it.
Vanessa - hope you are ok after 3rd fec
Lenise - hope you are ok - have not heard from you in a while.
Well, I had 3rd fec friday - feel ok ish - yuk mouth and tired. Have learnt the hard way even if I feel ok - do not do too much otherwise I pay for it later. Have slept on the sofa for last two afternoons. Managed to persuade OH to put outside xmas lights up inbetween rain and wind today. No real plans for the week - will see how I feel.
Well, must go have daughters navity costume to sort!!!
By the way - now excatly where you are coming form regarding priorities - I love my work but things have changed now. Family time much more important - sod the money - bank manager will have to wait a while.
Hey all - hope you’re all well. It’s great reading that most of you are feeling okay most of the time!
I went to see my parents today (with my sister who has been staying with me this weekend) and had to laugh at my dad - I walked through the door and the first thing he did was pull my hair and say “Oh it’s still attached then!” My sister has been reading a few discussions on here and was absolutely horrified! I’m just glad he’s acknowledging I might be ill - he’s been in complete denial and won’t listen to anything about any treatments I’ve been having. I did laugh though - I do feel a bit of a fraud coz I feel completely well. Isn’t it amazing how you forget how rubbish you felt a week ago? I am dreading the next one though.
Cally - gutted about the curry! I was planning to go out next weekend for a curry, but might stick to something mild if we do go.
Lorna - I hope you manage to feel good for the rest of the time before FEC no 2.
Margaret - good luck with the boss… glad you’ve got lots of support there and I’m sure they won’t mind you taking time for yourself.
Anne - have fun with the costume - what have you got to make?
Love to you all (and here’s to some Christmas cheer coming our way)
Vicky
Back being nosey here - Lorna, I just noticed from one of your other posts that you are in Shropshire. I lived there for 20 odd years before I moved to Scotland - just wondered whereabouts you were?
Hi ,
glad to report the mouth ulcers are dying down now . The curry wasn’t even hot so it seems like its just an instant reaction to spices on the tongue and I guess everything is pretty much stripped back so its like treading on eggshells
oh well , it was my girlie book club night in so I went along with their choice . Next time I’ll sip bread and water
champagne was fine though . Havent had much alcohol at all , a glass once in a while but the chemo nurse did recommend red wine to me so its doctors orders
Just to harp on about steroids , has anyone declined them and what happens ? I was told that they are for my well being and appetite but my appetite doesnt need stimulating at this time of year and I just wonder would I feel low without them ??
Louisa - agree I definitely feel like I am in a biology experiment . Anything I put into it I wonder what the chemical mix will be ! I read of a lady in one of the tabloids (of course) who mixed some bleach and toilet cleaners together and there was an explosion in her house - well I described that to my surgeon and he laughed at me saying your body is not a crucible but it does feel like it to me . I never even took paracetamol before so I feel totally toxic. I must ask my hubby if I glow in the dark …
I am really impressed with all you ladies who keep track of all these posts and know what everyone is up to.
